Long lines…

I’ve been off work since November with ‘mixed depression and anxiety complicated by grief and trauma’. The thoughtful and consistent support I’ve received has involved focusing on doing very little in order to regroup and recover before the General Medical Council (GMC) decision on the fitness to practice of LB’s responsible clinician (Feb) and the judgement in the Health and Safety Executive (HSE) prosecution of Southern Health NHS Foundation Trust (March). 

Doing very little has been a revelation. After early days of intense agitation and wondering ‘What the actual fuck…?’ I’m getting good at it. I can wash a pan or sort out a small pile of crap (untouched since 2013) with unprecedented attention and a (non) speed that would beat the slowest of slow lorises. Disrupted/nightmare-filled sleep is more manageable when you can decant from bed to settee with a blanket during the daytime. Reducing panic attacks to moments of breathlessness/fear is something else.

I’m shocked now that Rich and I returned to work so soon after LB’s death in 2013 (with no pressure from either of our employers). But of course back in the day we had no idea of what lay ahead. 

“Who supported you after LB’s death?” asked the mental health team a few weeks ago.

Supported us? In the wake of LB’s sudden, brutal, unexpected and utterly preventable death? Like a police liaison officer? Ah. No. LB died in the NHS. There’s none of that stuff. Respond offered us telephone counselling via social media. 

We didn’t know…

I think we probably thought at the time that work would be a distraction from intense pain while the wheels of justice and accountability turned in the background. With the odd nudge from our newly appointed legal representatives.

We returned to work in the early days of the dirty tricks game the Trust and local authority were playing. All we knew at the time was that the Trust pegged LB’s death a ‘natural cause’ death in online board papers in late August. We didn’t know about the behind scenes activity; the briefings and secret reviews; the twists and turns, lies and obstruction. We didn’t know these processes would drag on for years or how much of an enormous collective effort would be necessary to gain accountability.  

This was and is our ordinary. In the extraordinary space of public sector related preventable death.

As it is for so many other families. Many of whom have endured more than the 4.5 years we have, while others regularly join this liminal space. There’s little change. There’s little support for young people who struggle and teeter on the brink of admission to inappropriate settings while their loved ones do everything they humanly can to pick their way through the paucity of appropriate care. It simply ain’t good enough.

A new National Director…

Ray James, the newly appointed NHS England National Director for Learning Disability tweeted earlier today.

James is, of course, one in a long line of people charged with the task of reducing the scandalous number of people incarcerated in assessment and treatment units. We’ve witnessed a series of awkward and sometimes embarrassing failures in trying to do this, not least the Winterbourne View Joint Improvement Programme/Concordat and Stephen Bubb’s big breakfast. I don’t doubt James’ determination and commitment to the task he faces. What is concerning is the disappearing of everything that came before. A snapping of lines.

Another day, another face, another resolution. While people continue to live heartrendingly miserable existences.

No #Learningfromdeaths

Rich was appointed as one of two family representatives on NHS England’s Programme Board last summer for the Learning from Deaths programme (work commissioned as an outcome of the Mazars review). He received an email from a family advocate who said that families would be reassured by his involvement in the work. The first event he attended was a two day gig at the Oval in November. He walked out after two hours. The meeting opened with two apologies from NHS England – not for the fact that 75 bereaved families had to be in the room in the first place – but that no work had been done for last ten months and for the shoddy organisation of the original meeting. As the meeting unfolded, Rich felt he could not validate the process.

In December a further event was held in London with Jeremy Hunt and the great and the good. The unofficial erasure of any focus on the premature mortality of learning disabled people was completed during this meeting. Two years pretty much to the day from publication of the Mazars review. Hunt ploughing ahead with his misplaced belief that improving the process of investigation for patients more generally would improve the investigation of the deaths of marginalised patients. 

What about the work relating to learning disability related deaths? I and one other family member tweeted during this event.

“Ask NHS Improvement or NHS England” replied the Care Quality Commission. “They’re tasked with taking forward the recommendation relating to learning disabled people.”

We did. Neither responded. 

Certain people don’t count. Or worse.

They never have.

A full circle…

We woke this new year morning to the news that Toby Young has been appointed to ‘help lead’ the Office for Students (OfS). 

There is so much so wrong with his appointment… a quick search on twitter will reveal his appalling views, ill-informed commentary and actions while he tries to (ironically and pointlessly) disinfect his own timeline through a heavy handed programme of deletion. Relevant here is his apparent distaste for disabled children and associated flag waving for ‘progressive eugenics’.  (Improving the ‘genetic stock of the least well off’ in an attempt to improve the overall national stock…) 

Eugenics is, of course, eugenics as @Education720 points out: 

Woolf’s diary entry was written in 1915:

… we met & had to pass a long line of imbeciles. The first was a very tall young man, just queer enough to look at twice, but no more; the second shuffled, & looked aside; and then one realised that everyone in that long line was a miserable ineffective shuffling idiotic creature, with no forehead, or no chin, & an imbecile grin, or a wild suspicious stare.  It was perfectly horrible.  They should certainly be killed.

There are long, long lines that can be traced here. Plentiful dot joining between the desire for the ‘improvement of the British breed’ (Churchill, 1899) and the eugenics movement. The continuously poor treatment, neglect, bullying or abuse of learning disabled people in whatever setting – long stay institutions, the community, inpatient hospitals, home – by a range of individuals and professionals over the last century. And Young’s support for ‘progressive eugenics’.

Complex and complicated strands are interwoven into and between these lines; ignorance, maliciousness, systemic and structural processes, cronyism, fear, power, gender, economics, culture, power, politics, stupidity, greed, elitism, narcissism… the list goes on and on.

‘Progressive eugenics’ is a deeply flawed and harmful ideology that denies any recognition of the humanity, creativity, compassion, love, diversity, joy and brilliance people bring to society. I miss LB with an ache that hasn’t diminished in over four years. My heart contracts and eyes well up in a split second whenever I think about his gentleness, humour, generosity, curiosity and straightforwardness. Contrasting his obvious qualities with the bile that Young (and others like him) spew, with nonsensical reward and little censure, is unspeakably grotesque.

How is it possible that not one person, in a long, long line of influential people who can and should speak up and call this for what it is, ever does?

 

Crown Court

When we were kids, off school with a bug, flu or other illness, we’d snooze in front of the big old (tiny) TV. ‘School programmes’ (shudder) in the morning followed by a less dull but still dull drama (was it a drama? I dunno… maybe it was based on actual cases) called Crown Court at lunchtime.

Crown Court. A kind of ritual endurance, marking the mid point to the crawl to the end of school time and delights like Little House on the Prairie. Time for lunch if not already scoffed. A soft, non medical drug to easily bring on slumber if you felt like shite.

I dug out the theme tune on Youtube earlier. Rich, in another room, unexpectedly shouted “Is that Coronation Street?”

Off sick to the same tune/drama. Capturing the ennui, traffic free streets, all male advocates, a dose of beige and a baby Zoe Wanamaker.

 

On 18 September Sloven pleaded guilty to the Health and Safety Executive (HSE) prosecution of LB’s death at Banbury Magistrates court. The magistrate referred the ‘case’ to the Crown Court. The next hearing was held in Oxford Crown court on October 13*. The judge then set a date – 27 November – to decide a sentencing date. [I know.]

A second HSE prosecution for the death of Teresa Colvin was raised during this hearing. Teresa died a year before LB. Months after Mike Holder, a health and safety expert, meticulously documented patient safety risks which Katrina Percy and the Sloven board ignored.

[Edward Hartley, in turn, died months after LB’s death flagged up issues around epilepsy training and understanding, risk assessment and observation levels. Edward’s death, like so many others, has yet to edge or inch towards proper scrutiny and answers.]

On 20 November the HSE prosecution relating to Teresa Colvin’s death was held at the Oxford Magistrates court. [Sorry. It’s complicated].

Tomorrow (Monday) a hearing at Oxford Crown Court will pin down the timetable for the sentencing date.

The judge will be asked to sentence both HSE prosecutions together. Or formally agree to do so.

This is for various reasons, not least the importance of joining the dots between what happened to Teresa and LB and for the judge to understand the extent of (repeated) failings. Other considerations are the importance of consistent sentencing and costs.

Breathe.

Crown Court. Childhood memories. The never ever. The never colliding.

LB. Teresa Colvin. Shades of Edward Hartley. And so many others.

The sentencing hearing

The sentencing hearing is, we’ve been warned, likely to last for up to two days and will probably happen between next February and June. Time has lost any meaning as next year becomes dusted with various dates or anticipated dates. I can’t imagine what life without the stench and stain of NHS related processes looks or feels like.

The HSE barrister will present the two ‘cases’ in turn and the Sloven barrister will present a set of mitigating circumstances to try to reduce or contain the punishment (fine). They have a statutory duty apparently, as a public sector body to do this.

There is no such statutory duty to prevent a failing Chief Executive disappearing with a year off and around a £200k pay off. There is no statutory duty to stop a public sector body from recording a preventable death as one of natural causes. From openly and publicly withholding information that is in the public interest. From wasting public money on dubious training programmes. And the rest.

One grotesque rule for the bloatedly powerful and another for the rest of us herbs.

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*I had at the time, and have had since, visions of Richard Partridge telling me to turn to page 908 in a massive legal bundle to confirm that, yes I was not present at this hearing. And then scuttle back to page 26, para 4…

I was in the US. I wasn’t supposed to be there.

 

 

Reflecting on the GMC hearing

Spent the day, exhausted, dozing on the settee and trying to make sense of the GMC tribunal*. The full determination can be read here. Having waited since August 7 when the tribunal began (and the dread leading up to that date) and limping over the past two weekends of part hearing, hearing that the panel found that Valerie Murphy’s fitness to practice was impaired was both a relief and beyond distressing. I’ve no coherent thoughts, just a set of (overlapping) questions and reflections. Hopefully the process of writing will help.

1. Is Murphy’s ‘medical practice’ common?
The damning determination (worth reading in full to get some idea of the medical ‘care’ learning disabled people can expect to receive) misses some points that made my stomach curdle during the August hearing. Is specialist learning disability health provision so impoverished that it’s OK to prescribe medication before meeting patients? What does this mean and suggest about the treatment of certain patients?

Can it ever be acceptable, knowing you’re going on a two week holiday at the weekend, to not see an 18 year old young man you’ve agreed to be admitted on the previous Tuesday evening? A young man brutally restrained and sectioned that first night [Howl].

Is it common for medical consultants to tout a travelling suitcase with patient records for a colleague to rummage through?

Have these points dropped off the determination because there are bigger issues to pursue or because they aren’t seen as unusual?

2. Was Partridge’s ‘defence’ appropriate? 
A pre-meeting with the GMC earlier this year to go through my evidence left me reeling. It wasn’t a patch on the cross-examination I was subjected to in August by Murphy’s barrister, Richard Partridge. The pre-meeting preparation suggests that the cross-examination I endured wasn’t unusual.

Partridge repeated similar lines to his colleague, Alan Jenkins, who represented Murphy at LB’s inquest. Both focused on my ‘failings’ and the ‘Dr Crapshite’ post. On what they both seemed to view as unacceptable, unreasonable and discrediting action by a feckless mother. Ignoring what that post (and so many others) revealed about the lack of available support. This focus says so much more about them. And/or their client.

3. Ted why? 
Twitter discussion has focused on Murphy still practicing in Cork. Earlier, a minor bombshell from Stuart who lives in/near Cork. Murphy’s appointment (which is still unclear) was heralded as a ‘turning point’ in CAMHS service provision. An expert from Britain, leaving her investigation cloud behind her.

Prof Ted Dinan, the Gut Man, was prepared to offer a character witness to a colleague he seemingly barely knew. What were you thinking Ted? Boldly pegging Murphy in the top 10% of Irish psychiatrists [shudder]. He told the travelling suitcase story without faltering. While twitter groaned and buckled with disbelief, a few sharp questions reduced his story to a handful of contact hours – “in an academic year she gave two lectures and approximately 14 hours of tutorials” – and help with 5 patients across two years.

He stated that he regarded Dr Murphy as “extremely competent” and marked her apart from other consultants he had worked with, particularly in respect of her willingness to come in and give her assistance.

In contrast to her apparent unwillingness to see LB for 19 days.

4. What price power and insight?
Power. On April 24 2014 Murphy received a letter from the Sloven Chief Medical Officer stating ‘it was not considered that any further action is required in this matter‘. A clean bill of medical health from the Sloven exec. The various CQC inspections, Verita report, inquest and Mazars review processes led to no further scrutiny of her medical practice. We made the GMC referral (with Charlotte Haworth Hird) in May 2014.

Without this referral Murphy would, I assume, be continuing her practice of ‘implicit risk assessments’ (in her head) and remote prescribing in Oxfordshire, Cork or somewhere else. How can this possibly be?

Insight. Reflexivity or reflectivity is a central task for sociologists. Constantly reflecting on stuff; who we are in terms of our identity and experiences, our assumptions, what we bring to our research, how we interact with research participants and the data generated, and our analysis. I’ve always thought of it as a sound task for life. Like I’ve long thought that ‘easy read’ texts should be the stuff of everyday life, not an added extra when funds or thought permit. Adjustments that make life better for everyone.

Murphy failed on insight. She failed over and over again. Her barrister arguably added to this with his own apparent lack of insight. 

We’ve been brutalised by this process. At the mercy of timescales decided by others, cross-examination, forced to revisit what happened, rehashing blame lines… our lives on hold. John Lish captured the experience of the tribunal perfectly in a tweet.

There must be a better way.

*Am now off ‘sick’ for the week. Wary of the extreme spaces we now inhabit and what these mean. It’s only two weeks until the @HSE hearing to set the date for the HSE hearing…

The afternoon before the hearing

 

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I spent the afternoon with Tom trying to get photos from an old mac that’s been gathering dust and more upstairs. Eventually, after exemplary focus and persistence by Tom, and a few chuckles along the way (yep, yep, my computer smarts are shite, I’ve a desktop that demands a cone of shame and I’ve not updated anything since about 1749), 451 pics from the (g)olden days are now on my desktop. (A fair few have an alarming luke white question mark but we can save that battle/puzzle for another day).

Above is LB ploughing his own path up a hillside holding tightly onto to his i-summat music player. The gadget he produced myriad playlists on, back in the day. Each with one song on.

It was our last family holiday in 2010. He did what he typically did; stuff (the day out in the Black Mountains with a makeshift picnic) in his own way, own time while breaking nonsensical and meaningless rules along the way. So what if he was far behind? He got there in the end.

Before we got stuck into this task Rich and I walked into town to get a hard drive. On the bus home Julie Dawes, Sloven CEO, rang in response to my email from Friday. Good for her for calling back. I want to present the gist of our conversation here because I think it contains or flags up important elements/ingredients for the relationship between Trust staff and bereaved or harmed families.

The Sloven board apparently made the decision that no board member would attend the Health and Safety Executive hearing at Banbury Magistrates court tomorrow for ‘various reasons’. This was because they decided it would cause us further distress and it was ‘usual’ to send the communications manager to such hearings.

Julie Dawes rang me out of the blue on Friday because she was worried about the distress their planned press release would cause us. We weren’t asked whether the attendance (or non-attendance) of a senior exec at the hearing would cause us distress. This suggests that baby steps of improvement (concern about press release distress) remain coated in relentlessly longstanding concern about Trust reputation. And an accompanying lack of really understanding what is important to families.

You can’t assume distress in one area (attendance at the hearing) while checking it in another (press release content) without raising questions about what is actually ‘important’ here. Our feelings as a family or Sloven comms/reputation.

And when you’ve endured the extraordinary through Trust actions like we, and so many other families, have the ‘usual’ is irrelevant and obscene.

It’s really time to start walking up hills using the example of LB (and others) if you mean business around changing practice. Chuck out the grotesque, the turgid, the meaningless, the offensive and step up. Demonstrate the ‘impact’ a patient’s death has had on your organisation with actions. Not talk. [As an aside, and a frankly unapologetic plug for my book, one of the things I learned from early readers was ‘show don’t tell’.]

Think about the thin arguments you’re making and challenge them yourself. Instead of sending the comms manager ‘as usual’ (I struggle here with what ‘usual’ is in such circumstances), make sure a board member pitches up, even if you anticipate a five minute hearing. LB wasn’t given the chance to live. Don’t show further disrespect or worse by thinking it’s only a ‘five minute hearing’, or because you want to downplay the importance of the hearing.

Stand up publicly and show you fully understand and recognise that your organisation is responsible for the preventable death of a patient. Until you do this, no other fucker is going to.

Julie Dawes said on Friday she wanted to offer any personal help she could. It turns out this was distinct from arrangements around the hearing tomorrow and board decisions about attendance. A revealing comment (which is not to knock the offer of help which we appreciate). For families ‘the personal’ is too often the process. And the obliteration of humanity through that process.

By the end of the conversation I think we were sort of on the same page. I appreciate her sticking her neck out by ringing earlier. I hope productive discussion followed our fraught conversation. And I hope some respect will be shown to our beautiful boy who died in the cross hairs of a greedy, arrogant and failing Trust, local authority and CCG, tomorrow.

He deserved so much more.

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Trivialising trauma

I revisited the letter from the Oxfordshire County Council commissioner this week. Christallbloodymighty. The 9 page letter sent to a disability rights activist a year or so after LB died and passed on to us just before his inquest in October 2015.

With increased incredulity, rage and distress, I googled her. Blimey. A more recent local news story. Mrs Cross of Oxford. Sent a free lesson at a now closed leisure centre. She seems more outraged by this than what happened to LB.

The first part of section 10 of the letter begins:

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So much so fucking wrong.

  • The erasure of LB.
  • The diminishing of what happened to one ‘frustration’ (of many?)
  • The removal of agency; I’m out of control, irrational, hysterical.
  • Blaming the blog
  • Checking people are still alive [howl]
  • Blaming admin
  • Prioritising the absence of a particular colleague
  • Erasing LB.

Sending a letter to a patient who died a preventable death on your watch is more than ‘crass’, ‘upsetting’ or ‘unfortunate’.

Writing this letter and bleating about a random promotional freebie exercise class to a local paper screams so much so wrong with values.

Has (the audacity of) publicly documenting poor provision on ‘the blog’ and the light shone by #JusticeforLB turned senior public officials into monsters?

Or just exposed reams of rubbish wrapped up in ‘No one will ever know about or expose our inadequacies’ complacency parcels?

‘Upsetting’

I’m struck by the use of the word ‘upsetting’. In Josh Halliday’s Guardian piece about the tribunal, the MPTS responded

We are sorry to hear how upsetting Dr Ryan found the process of giving evidence to the tribunal.

An extraordinary trivialising of trauma.

‘Upsetting’. They heard how upsetting I found it? How? Through Josh’s questions? From MPTS staff present? From jibber jabber by the coffee machine?

From the clearly upset clerk who led me into that vicious den, removed me from it for a few minutes and then returned me to it?

Upsetting. What is ‘upsetting’?

LB missing his beloved Olympia Horse of the Year Show because of whooping cough. [We both had whooping cough, as did Fran’s son, James. I have a tear inducing fondness/nostalgia remembering those whooping cough weeks]. I was upset that LB missed the horse show.

Upset seems to relate to missing things. An event, a job, an exam pass, a promotion, a ticket, an opening, a closing, a dying plant, a building, a pub, a writer, an actor.

But it ain’t receiving a letter addressed to your dead son telling him how well the hospital he died in is going to care for him in the coming year.

Or being forced to answer a battery of nasty, credibility shredding non-questions for two hours in front of a tribunal panel and the clinician responsible for your child’s care.

As time drags on, space emerges to reflect more clearly on what happened. To make reflections, sense or no sense. There are clear similarities between the responses of the commissioner, Murphy, Percy and others.

Cut from the same cloth. Cloth woven with a thread that obliterates humanity, reflection and recognition of people and their families. No remorse, no genuine sorry, no regret, no nothing. Just blame. The mother, the blog, the frontline staff.  [Dip into the Katrina Percy reply for an extraordinary letter with 40 or so mentions of ‘I’, ‘me’ and ‘mine’ in just over two two pages.]

I’m wondering how far the stain of this model of ‘leadership’/senior NHS staff spreads. Are commissioners, learning disability psychiatrists, Trust CEO’s typically petty minded, self obsessed and ignorant of the lives and love of the families they are supposed to be serving? Is this unchecked or even encouraged by their peers/the culture of the senior tier?

And to those of you still monitoring this blog with a defamation lens. In case you still ain’t got it. Our beautiful boy died. He died.

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A levels, love and waiting for the tribunal

A ‘day off’ from the GMC tribunal which continued in private today. Day three of deliberations to determine the facts.

A level day.  Early morning jitters (and humour) from Tom:
Tom
He stormed it. We could not be prouder.

Funnily enough, a photo of Tom and Owen from 2012 popped up on Facebook. A day out in London months before Tom’s childhood was to change irrevocably. Owen, then 17, turned turned 18 the day before LB died. [I know].

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A friend messaged earlier saying congratulations and Tom has ‘done his part in saying ‘fuck you’ to the system and not allowing it to control’. Rosie, Will and Owen have also done their part in doing this. They have, in addition to the death of their beyond loved brother, endured home becoming a site of activism, anger, rage, despair, distraction, tears and more tears.

About a year ago now, at some particularly low point, Rich and I decided during an unusual weekend home alone that we would chuck in the towel on the fighting front. It was too much. It wasn’t fair on the kids. We were trying to climb a super smooth glass NHS mountain coated with a combo of pig grease, melted butter and olive oil.

We told Tom on his return expecting relief. A levels looming and all. He was shocked we’d even consider it. The love, concern, steadfast and unquestioning support and humour they have demonstrated over the last four years, mirrored in the actions and support of their partners and friends, is something we treasure beyond words.

These last few weeks have been particularly unpleasant. We’ve been shoehorned into even more extreme spaces by the careless fuckwaddery actions of the Nursing and Midwifery Council sharing our personal details and Mr P’s brutal and unnecessary cross-examination last Tuesday.

Wilful attempts to discredit without any relevance to the allegations under examination.

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On Wednesday we waited for the tribunal to begin again in public. A inhumane waiting even without the unchecked, salacious and unnecessary savaging. I lay on the settee, under my Routemaster blanket, refreshing twitter repeatedly. Bess dozed on the chair opposite. I took a pic of her on my ipad and tweeted it.

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#Waitingforthetribunal

This generated an unexpected and hilariously heartwarming set of photos; the pets of twitter. Waiting in solidarity for the tribunal. Including a plant (a groot?) which I can’t find now (sorry).

Names, spaces, commentary and love.

I’ve written about pets and health, we’re currently putting together a funding proposal with vet colleagues to further explore this area and yet I didn’t expect to find such solace in the sharing of photos of much loved animals on twitter. It made me chuckle. It was grounding. It was kind of reassuring.

Yep, I thought. These non humans could teach us a lesson or ten. If we would only start listening.

Late morning tomorrow (Friday) the panel are due to announce their determination on the facts (whether the doctor is guilty of the remaining charges she has not admitted to). The tribunal will then be rescheduled to continue at some point in the future.

We will continue waiting. Four years and six weeks on.

Being (in)sane in insane places… in four parts

Part I

Waiting for the GMC tribunal to come back from ‘in camera’ (secret) discussion today. It’s impossible to do anything constructive. Wait. Mope about in bed. Play Candycrush. Clean the floor badly. Answer a few work emails. Pace around the house. Play Candycrush. Poke at weeds for a bit. Mope. Back to bed. Wait.

Agitate.

Part II

We’ve waited four years. But the events of last week make it impossible to concentrate. The cross-examination brutality, the revelation that this blog was causing anxiety among consultants before LB was admitted to the unit and other outlandish arguments by the doctor’s barrister, RP.

Including his bizarre claim he had no computer access to produce submissions for the Friday morning. In central Manchester… sitting next to a colleague with a laptop.

There was incredulity and practical info on twitter.

The next morning RP circulated a set of handwritten bullet points ‘not in narrative form’:

He later argued:

Not all of us are au fait with narrative… You have to find a computer first and then go into free text…

Oh my. Did he handwrite a set of bullet points (a day or so after deftly destroying me as a reliable witness) to demonstrate the point that computers aren’t necessary to do a good job as a consultant?

The day ended with this comment:

Part III

The GMC are keeping us informed about the timetable and process of this hideous process with thoughtfulness and sensitivity.

This is where we are at:

The panel are currently reviewing and considering the evidence given last week and need to agree the position on each charge that has not already been admitted and draft a full decision referring to the evidence, setting out their reasoning for each of the charges.  
 
The hearing will reconvene in public and the determination will be read out. Parties may need time to fully consider the determination then the hearing will move to the second stage. Further evidence can be called and submissions will be made on behalf of the GMC and the doctor in relation to whether the doctor is impaired. At this stage, the Tribunal meet alone again and need to make a decision on two matters: 1. whether the facts found proved are serious misconduct (the meaning of which is set out in various case law) and 2. if so, whether the doctor is impaired by reason of her misconduct.  It is not known how long it will take for the Tribunal to make this decision.
 
Depending on the Tribunal’s determination on impairment, the panel will consider the position of sanction. This would involve further submissions by both parties and another determination by the Tribunal.
Apparently the panel are unlikely to give a determination on the facts tomorrow.  The determination (the next step before the next stage) will likely now happen on Thursday. Coinciding with Tom’s A level results.
Part IV
This hearing has dominated the last few months for us. The Nursing and Midwifery Council (NMC) data sharing breach-too-far is bubbling on in the background. We’re less than four weeks from the Health and Safety Executive prosecution. We managed to polish off the personal impact statement yesterday, thank fuck. In less than a page.

You should include the fact you haven’t had a bath since LB died.” said Rosie. “And you loved them. I remember when we were little and we used to come in and chat to you. Sitting on the toilet…”

My definition of crap has taken such a battering I no longer have words for what we’re enduring.

We’ve been pushed into such an extreme space now that daily interaction with people is becoming difficult. Throwaway conversations in the street about the weather, summer holidays, dogs are hard to engage with. You can’t lay the shit storm we’ve been subjected to on any passerby or acquaintance. At the same time, saying, vacuously “Yeah, fine” is harder to say.

This led me to think about another layer to the campaign and social media activity; the sharing of rage, distress, incredulity and bafflement. The discussion and commentary. We know we wouldn’t have got ‘this far’ without social media. I hadn’t thought about how we would have personally been derailed months or years ago if we were experiencing this in isolation.

An hour into Mr P’s interrogation last Tuesday I was doubting myself.

It’s harder to doubt when so many others express sense, offer expertise (in any shape or form) and solidarity. And genuinely care.

 

‘I want to ask you a little about your blog…’

This blog has again loomed large. It did at LB’s inquest and again this week at the ongoing GMC tribunal. Dr Murphy’s respective barristers both presented it as a transgressive space/action that somehow underpinned or fed into what unfolded. It was a malign catalyst for something (I’m not sure what either barrister was trying to argue other than the blog damaged the relationship between some consultant psychiatrists and a patient’s mother).

How social media ‘feedback’ is ‘used’ by health and social care is the subject of considerable research, some of which is happening in our research group. A colleague has been interviewing people who document their health experiences online to explore why they do so.

When I started writing the blog back in May 2011 ‘online patient feedback’ was not a twinkle in my eye and possibly wasn’t even a thing. I wanted to capture the funny stuff that happened in an online diary. I didn’t expect it would be read beyond close family and friends (or even by them). In fact it became quite widely read and a few hundred people started to follow it. The fun focus sadly disappeared towards the end of 2012 and it became an account of trying and failing to get support for LB and subsequently the 107 days he spent in the unit.

This week the blog questions unfolded like this [RP is Dr Murphy’s barrister] :

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This was ground already thrashed out during LB’s inquest nearly two years ago now [VM is Dr Murphy talking about a community psychiatrist].

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A different view was presented by the Band 6 nurse during his evidence:

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I was told a few years ago that a STATT staff member was warned about LB’s imminent admittance four days before he was admitted. I thought this must somehow be wrong. I mean we didn’t know the unit existed until the day we took him there. It was almost in the realm of Mulder and Scully terrain to think that discussions were going on, without us, about a specialist unit we were to find out about from a mate on March 19th.

This week it became apparent that Dr Murphy and other consultant psychiatrists had discussed LB’s potential admittance to STATT (unrecorded discussion) in the weeks before it happened. I spoke with one of the consultants from back in the day earlier today and it turns out that my blog was known about before LB was admitted to STATT. My blog (and my aggression or forthright communication depending on where you sit) generated strong emotions, anxiety, irritation and distrust. There was, as JC said ‘an irrational fear of the blog’.

Social media activity like this was unprecedented and no one who was bothered about it knew how to deal with it. Appeals were made to senior Oxfordshire County Council (OCC) levels to somehow close it down. These were robustly rebutted by a redacted person who, like JC above, suggested that it created an opportunity for engagement.

I appreciate the frank discussion which happened with no notice today. I was also shocked that consultants could be so discommoded by the blogging of a parent, that none of them were able to read, discuss or engage with what was being written in a constructive way. I’d been carefully documenting the complete lack of health and social care support for an increasingly anxious and unwell young man for three or four months by then, or possibly longer.  This is remarkably similar to the Blog Briefing Sloven circulated the day after LB died in which concern focused solely on reputation and professional pride.

I wonder if my writing style somehow added to the fear and distrust. The irreverence and liberal swearing. If I had written a more conventional and ‘polite’ account would it have been better received? I suspect not given the consultant I spoke with denied actually reading it. This was irrational fear.

I’m baffled that not one of these consultants was able to speak to me about their concerns. (Interesting we could have an open discussion today… I assume the toxic mother label is finally shifting as Sloven failings are finally recognised.) I’m deeply horrified we were oblivious to this consternation about the blog when we admitted LB. As the GMC argued this morning, it was Dr Murphy’s responsibility to talk to me about LB’s treatment. It was also the duty of these consultants, surely, to share their concerns with me about my blog?

I suggested to the consultant that the extreme response at the time was generated by the lack of actual challenge to medics by patients or families who are too easily silenced in different ways. The blog created a space of challenge but instead of being used to improve practice, or even engage with and consider the limitations of practice, it was despised and I suspect had an impact on how LB was treated. The veneer of professionalism can be shown to be very thin when ‘transgressional’ activity takes place.

There is some irony that #JusticeforLB is now used in health and social care learning and teaching. The blog also created an unusual contemporaneous record of what happened. The power of the posts that reviled or worried staff before LB died formed part of the evidence at his inquest. The typically disempowered position family members occupy when their testimony is dismissed as ‘anecdote’ differed here. Lowly families aren’t allowed the defence of ‘I did it in my head’ like Dr Murphy has used this week at the tribunal but I had written it down.

There is much to think about, discuss and chew over here in some ways. In other ways there ain’t. Health and social care professionals should be engaging with patients and families in different ways, at different times and in different spaces. They should be encouraging comment and feedback. I hope our experience is already historical and within the ivory tower of unassailable medical practice medics are learning to be more humble and take public accounts of patient experiences as opportunities to better understand the consequences of their actions, or non-actions, and the interaction between the various individuals involved. These accounts should be treasured not vilified.

 

 

 

The bleat action continuum

Over two years ago now I was writing about ground elder and the #LBBill. I’ve moved into the front garden recently, leaving the elder battle in kind of easy truce [I failed]. The front garden has tall ‘weeds’ with yellow tops which grow to middling head height every summer, leaving columns of snappable woody stems in the autumn.

Turns out these fuckers are worse than the ground elder. They have incredibly dense interconnected knotted lumps of a main root with shaggy swathes of stringy roots. Each one involves a hefty dig, more digging and almost full body wrestle to remove it from the ground. I can almost hear the earth breathing as they are lobbed into the brown bin.

Today we were due to hear the outcome of the Nursing and Midwifery Council (NMC) investigation into how they could possibly have shared personal details to the six nurses under investigation and their counsel.

Given the General Medical Council (GMC)* tribunal into Dr M’s fitness to practice starts on Monday in Manchester for two weeks and Rich and I are on extreme stress settings, I naively hoped that the NMC would be in touch early on in the day to limit the stress. We’ve had way too many 5-5.30pm Friday disclosures over the last four years.

The day dragged on. I punctuated work tasks with patches of root wrestling. Still nothing from the NMC. By 4pm I drifted onto twitter. It was impossible to concentrate. There was some discussion around what time we might expect to hear from the NMC and recognition that the Friday afternoon ‘disclosure dump’ is clearly modus operandi for public sector organisations with no heart or feeling. I resorted to tweeting the CEO about the cruelty of this delay.

The email pinged into my inbox. At the very outer edges of the allocated time.

Tip: Because you say an investigation is going to take x amount of days doesn’t mean the investigation has to take x amount of days. Focusing more attention on a complete balls-up to reduce the time the investigation takes and the accompanying stress for the family is the least you can do in a situation like this. Particularly if

  1. you had an additional 15 days between discovering the data breach and bothering to contact one of the four people affected.
  2. you have previously and publicly spent £250k redacting documents requested by another bereaved family in a breathtaking self protective act.

One of the numerous shite practices we’ve noticed over the past four years is the tendency for senior public sector staff to bleat ‘It was not our intention to do x, y or z’ despite doing it. Or ‘On reflection we should have done…’ when they didn’t.

What this really means is senior staff act with intent (and speed) when it involves their (organisational or own) reputation/skin and don’t when it doesn’t. The briefing on my blog circulated the day after LB died is an exemplar of this bleat action continuum.

The NMC letter outlined how sorting out the return of our personal data (first shared in November 2016) is shambolic. A mix of returned data, alleged destruction of data and outstanding information about copies made.

About as unreassuring as you could get.

And then, in a move not worthy of being written into a cheesy, made for tv movie, it turns out that after discovering the data breach in July 2017, they re- shared my personal details with three of the nurses. Yes, you read that correctly. Re-shared. Nine months after first carelessly tossing them around. But only [bleat] the same information (minus my bank details) to the same people…

There is nothing like heavy handed, dosh drenched redaction when it ain’t your reputation under threat. Nope. Nothing like it.

Fuckers.

*The GMC have been exemplary in the approach to this: clear, detailed information, communication and organisation.

“Breathe before clicking…”

Three possibly related developments in the last week or so. [One] The Sloven annual report published last week included a paragraph about the ex-CEO and her pay off:

‘Independent capability reviews’ had determined Percy was fit to lead. Blimey. That’s  interesting. What do these reviews say?

Well, a capability review was carried out by YSC for a cheeky £116k excluding VAT last year. A report that has never seen the public light of day despite FOI requests by ex-governor Peter Bell. It apparently gave the board a clean bill of health in the summer of 2016.

One year later, not one executive or non-executive director remains in post.

Now I ain’t no mover or groover in senior NHS circles [cue the eye leaking emoji] but I can’t help thinking that purging a Trust board of every executive and non-executive director is a pretty serious move.

Percy is apparently exonerated by this [secret] capability review while two prosecutions for failings under her watch are pending. Just extraordinary. I mean I can only imagine/hope one prosecution against a Trust is a pretty serious and rare gig. While two…?

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In the same week, I received an email from a journalist scamp with a warning to breathe before clicking. [Two] Percy is back and touting for business  with some toe curling claims. These include inspirational and visionary leadership, creating an open, accessible and energised culture, and successfully delivering a major acquisition of services.

[Three] As the last few Sloven staff transfer over to Oxford Health or limp back to Hampshire, the door is finally closed on the grim and grotesque acquisition process Percy led back in 2012. I think it’s fair and reasonable to say that using the word ‘successful’ in relation to this process and the devastation that followed, is one of those stretches that should never have been a fleeting thought in a careless moment, let alone typed into a Linkedin profile.

I want to flag up here that I have no personal vendetta against Percy. I have no interest in her as an individual outside of what she, her actions and the ‘official responses’ to her actions reveal about the murky of murkiest corners of the NHS.

There are, clearly, serious questions generated by these latest unfoldings which should be of concern to all of us.

Not least, why do the various NHS layers – Jeremy Hunt, the Department of Health, NHS England, NHS Improvement, the CCGs, the Sloven board – allow, enable or facilitate these narratives of delusion and erasure to stand unchallenged, and the continued channelling of scarce dosh into insalubrious pockets and pots?

UPDATE: The PriceWaterhouseCooper audit clearly summarises the failings the bulk of which occurred under Ms Percy’s leadership. Deary, deary me… Something is Stinky Pete around here.

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